New forum

[Rebecca Petris]

I think we probably have very few members with SJS but I get phone calls every couple of weeks from people with this condition so I know there are people out there...

[locky]

tests

Dear Members

Could anyboby give me a test i can propose to my doctor to carry out to test fot S.J.S please... I would like to rule out this syndrome or detect if i have it....

many thanks
locky

[Silverlady]

All you ever wanted to know and then some

Here is the National Institute of Health's link to Sjogren's Syndrome and how it is diagnosed: http://www.niams.nih.gov/Health_Info...me/default.asp

Billye

[calli66]

I thought it was Steven's Johnson's Syndrome...

C

[Rebecca Petris]

Dear Members

Could anyboby give me a test i can propose to my doctor to carry out to test fot S.J.S please... I would like to rule out this syndrome or detect if i have it....

many thanks
locky

Locky,

SJS is not the kind of thing you can have without knowing it. It's an extremely serious, one-in-a-million toxic reaction causing skin death - similar to severe burns.

[locky]

sorry

I am so sorry for my lack of understading of this condition....
my prayers are with the members with this condition......

locky

[Silverlady]

Oops I made a mistake

We use sjs on the Sjogren's Forum to abreviate for Sjogren's Syndrome and I posted a link for that. Is there a way to remove it?

I must quit posting at night.

Billye

Sorry for any misunderstanding.

[Rojzen]

SJS patient first introduced me to Boston Sclerals

Bravo, Rebecca, for recognizing and including SJS patients, here, in a special new forum . .I first learned about Boston Sclerals by talking to a lovely gentleman who had suffered the devastation of SJS very suddenly after taking a particular medication to which he was sensitive, and who spent the next 20 years not being able to open his eyes sufficiently to see his loved ones. After being fitted with the sclerals, he could look at his children for the first time in decades, and went on to pursue wonderful years of athleticism as a long-distance cyclist. . .The magic here is that even after SJS, which you described so aptly above, one can look ahead to recovering good function, and resuming life's daily activities, if one persists and takes full advantage of the resources that are out there. . .

[Rebecca Petris]

Thanks Roj... And I am really sorry, everybody, for the confusion. I should have included an explanation of what Stevens Johnson Syndrome is in the first place - it's not exactly a household name. Quite rare really. But since one of the key benefits to medical forums on the web is helping people connect with others who have rare conditions, I just want to make it easier for people to find each other here rather than having to burrow through the stacks of old threads.